A blog about raising kids on the spectrum, working with kids on the spectrum, friends on the spectrum. And lots more.

Search This Blog

Thursday, February 10, 2011

Get Thee Behind Me Guilt.

I'm not sure if the fatherhood experience is riddled with a heap of paternal guilt. We all know the stories of men expressing remorse on their death beds that they didn't spend more time with their family. But this restrospective regret is not the same as the daily round up of 'what crap did I do to my kids today' that most mothers I know experience. Perhaps not on a daily basis, but at least often enough for it to be a recognised phenomenon. It makes sense that we mums may be hard wired to this disposition as it probably helps to ensure the survival of the species. If we feel no guilt about whether we are doing the best for our kids, then what would propel us to ensure we are doing just that? Apart from love of course. Which again is why we feel guilt. Because we care. In fact it is those mothers who feel no guilt or regret about poor parental decisions that are most likely to end up having their children removed. Their lack of compassion and insight is pathological in most cases.

So when you have a child with a diagnosis that is likely the result of an in utero 'insult' combined with genetic fallability there's lot to get anxious over. Then of course there's the process of getting a diagnosis, and specifically how it comes about. And there's the decision about which therapy path to choose. And always someone who does not approve of your choice leading to self doubt and more potential guilt. In some of these cases it is guilt for it's own sake. A habitual thought pattern. In other cases, that nagging sense that you are not doing right by your child may be just the warning necessary to change the therapeutic course. But how do you know which is which?

I admit to 2am musings. What did I do, or allow myself to be exposed to in the first trimester, or beyond, that may have caused his neurological development to go a bit pear shaped? Of course, it is generally a pointless exercise. If researchers don't know, why would I come up with the answer during a sleepless interlude? My point is unrelenting guilt that you may have unwittingly caused your childs ASD, either during or after pregnancy, is both unhelpful and unproductive, Spending time worrying about something you no longer have any control over, means missing the opportunity to look forward and plan ways to make the situation as good as it possibly can be. I would also point to those families in which several siblings have various degrees of ASD. For me this is incontrovertable proof of a strong genetic link.

More troubling, some mothers seem unable to come to terms with their childs diagnosis. They are steeped in grief and guilt that they are not doing enough to 'cure or recover' their child as other mums claim. This may take some down dangerous paths. Trying Chelation or Fecal Transplant therapies. Both of which have no sound basis as treaments for ASD, and the latter being particularly foul in every sense of the word. I am coming to think the best approach to raising a child with Autism is a pragmatic one. Acceptance is first, and is not complete until the guilt trip you put yourself on is finalised. Put it to rest and leave it there. Then move into the active phase of treatment, knowledge gathering, and learning to love the little person you have brought into the world as they are. And thereby finding joy in their achievements like you do with any other child. Not because they are one step closer to an idea of 'normal'. Your unique child will most likely always be ASD. If parents feel that both they and their child have not achieved the cure they aspire to this can only fuel feelings of failure, frustration and guilt for both. What a waste that would be.

Hey Lisa, I think that's the million dollar question. I have read a few theories about possible etiology. In utero 'insult' in the first 8 weeks, no idea what that might be but I assume exposure to something that may interfere with typical brain development. Over production of maternal testosterone or genetic vulnerability with an environmental trigger. The variation of symptomology and severity indicates to me at least we are looking at several causes.

But you know what, I never connected it with 'mother doing something wrong while pregnant' (despite being well attuned to maternal guilt) because the way I learned about it during a psych course, it was couched in terms of 'overexposure to androgens in utero causing faster right hemisphere development'. On reflection, the lecturers were extremely careful with their language which I assume is reflected in clinicians' approach.The implication was that it's just something that (might) happen and nobody yet knows why. THe emphasis was on the brain development and its effects, not the cause of that development.

Far preferable than thinking of it in terms of 'the bad bad mother gave the foetus too much testosterone and even though nobody knows why, at least we know whom to blame.'

That said, I blame myself for my son's above-average though sub clinical AQ score, but I'm not sure why! :)

The testosterone theory is one I would feel no guilt about as it is unavoidable I imagine. It does remind me of a time in my late teens when a man once said to me, you talk and smoke like a man. I'm certainly no epitome of femininity.

Laughed at your last line. I too will blame myself for any outstanding gifts he has. BTW what is an AQ score?

Have you heard of the 'extreme male brain' theory of autism from Simon Baron Cohen? (Borat's cousin or something apparently) basically that people with autism have more 'male' brains, which includes females as well. It's less politically loaded than it sounds.

AQ is a questionnaire also developed by him which is quite respected. A score >32 is generally consistent with ASD; the average for women in control groups is around 15. Mine was 24. I found this out during Psyc 101 when we had to volunteer for experiments, and I got asked to do all the autism related ones... which is how I got interested in the subject.

http://en.wikipedia.org/wiki/Autism_quotient

You can do the test herehttp://www.wired.com/wired/archive/9.12/aqtest.html

Thought I might extrapolate on the last comment.My pregnancy with Harri was stressful. I was also exposed to office renovations that included paint fumes. I also had a few drinks prior to knowing I was pregnant. And...the one thing I am most reluctant to admit to. I had the annual Flu shot. I also carry some guilt over the fact that I allowed him to sit in the birth canal for longer than I shoulda/coulda. I hate the pushing part and allowed the epidural to help me avoid it for some time. I sometimes wonder if having his head squashed for so long may have triggered something? Anyway, I always come back to the fact both myself and his dad have enough traits to verify some genetic predisposition.

Lisa I probably should have asked what an AQ score was before I said I laughed at it..I am aware, though not really familiar with the extreme male brain hypothesis. Clearly the high male incidence cannot be overlooked. It is an interesting concept, and I shall read some more.In the meantime I am off to do the test myself. This should be interesting.

My son's score - don't worry I was kidding, he is too young to have one. I'm fairly certain it'll end up being something like mine but on the other hand he may turn out to be Larry Emdur....

And as far as variables that affect pregnancy and childbirth - as you know, there are so many and so many combinations... I reckon you would find as many things to worry about in previous pregnancies if your previous children had been diagnosed with disorders, but it's only because of hindsight bias that you worry about having had a few drinks, an epidural, inhaled some paint fumes etc...

If you're really interested I will find the references for extreme male brain and AQ articles.

Yep I would like to read them. I did a Jenny McCarthy and googled, but anything you can lob my way would be great. You are right about the variables of course. My daughter has some sensory procesing issues. Some days I wonder if the only protective factor for her not being ASD was being born female. It seems to me that her father and I create wonderfully quirky kids.

I'm riddled with these thoughts all the time. I read a book once that theorized parents of children with special needs have chronic sorrow, which meant that our grieving process after the diagnosis never really completes....it just keeps going in a cycle....sure we accept it and things are going along just well but then something little will happen that just makes us slip back into the "what if..." or a sadness.

Yeah. I feel relieved that I quickly cycled through those strange stages of grief and found I didn't really lose anything. I think regression made me feel like I was losing my son, but I guess for various reasons I was able to let that feeling go rather quickly. He is my baby boy and as SOON as I was able to figure out a plan and take action, a burden was lifted. So I relate. Much love from another parent!